For professionals

Resources for researchers and sleep study centers

working with people who have hypersomnias

Research into hypersomnias can help find the cause of idiopathic hypersomnia (IH) and related sleep disorders and help clinicians more effectively diagnose and treat person(s) with hypersomnias (PWH). On this page, we offer guides for working effectively with PWH. Members of our Patient Advocacy and Advisory Committee (PAAC) who have idiopathic hypersomnia or narcolepsy type 2 helped develop these guides, which may also be helpful for people with narcolepsy type 1 or Kleine-Levin syndrome. For researchers and healthcare professionals who are already familiar with hypersomnias, these guides may be useful for training purposes.

Read our guides for information about improving:

  • PWH’s experiences at your center
  • Site safety
  • Quality of data collection
  • Research study design
  • Participant recruitment and retention, and more

Also, learn how you can: 

  • Partner with us to help you recruit participants, promote your research results, and connect you with experts
  • Apply to our research award programs

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Guide to challenges PWH face when participating in sleep research or sleep studies

Ask PWH about their specific symptoms that affect how they participate in sleep research or sleep studies. Then, use the tips in our other guides on this page to help minimize the impact of these common challenges, which include:

Sleep-related challenges

  • Severe sleep inertia (sleep drunkenness), which can last for hours after sleep studies end
  • Sleep paralysis, or sleep-related hallucinations, which can lead to confusion or fright
  • Cataplexy, which can lead to falls or short periods of unresponsiveness
  • Sudden steep drops in alertness during appointments, which can be similar to delirium, especially as the need for sleep builds up or during periods of sleep inertia
  • Interruptions to their usual or ideal sleep schedules
  • Forgetting or being unable to wake up for appointments

Cognitive challenges 

  • Automatic behaviors, which include partial to total loss of recall
  • Trouble coordinating tasks, like gathering medical records, especially from several offices
  • Struggling to communicate their thoughts
  • Difficulty understanding and remembering information or completing tasks, like a sleep diary

Research and sleep study-related challenges

  • Stopping medicine that may be helping their condition
  • Being misunderstood or mistreated by staff who don’t understand the unique needs of their rare hypersomnia sleep disorder
  • Coping with unpleasant tests like the MSLT (Multiple Sleep Latency Test) and MWT (Maintenance of Wakefulness Test) that stop them from getting the sleep they need and therefore significantly worsen their symptoms

Research study-related challenges

  • Losing access to helpful research treatments when the study ends
  • Spending their already limited mental energy and wakeful time on research activities
  • Financial challenges
    • Cost of travel to and from the research site
    • Loss of income from fewer hours worked
    • Cost of home or child care while doing research activities
    • Fees from medical records requests or other medical forms
    • Cost of birth control, often required when a new medicine is being tested

To read more about hypersomnia symptoms, visit our web page “Read about hypersomnia sleep disorders.”

Guide to communicating clearly with PWH

User-friendly strategies can engage PWH by making it easier for them to focus, despite their brain fog and other cognitive difficulties. 

Ask participants how they like to communicate 

Some helpful questions might be:

  • How do you prefer we contact you? By email, phone, or text?
  • Do you prefer information in writing, spoken, or through visuals?
  • Do you prefer to complete paperwork at home, online, or via a conversation with a team member? 
  • Do you prefer visits in-person or via phone or video?
  • How can we help you meet deadlines and remember appointments?
  • Are there any other people (supporters) who we should include in our communications with you?

Design questions to get clear and complete answers

  • Use word prompts, opening statements, or bulleted information to help participants answer open-ended questions or requests. 
    • For example, if you ask PWH to describe their nap schedule, prompt them to talk about how they feel when they need a nap, how long they usually nap, and how rested they feel when they wake up from a nap.
  • Allow plenty of time for participants to answer written and spoken questions. 
    • Asking one question at a time and allowing PWH to add more to answers at a later time can help with accurate results. Afterthoughts can be common for PWH. 
    • For example, if you ask what triggers sleepiness, PWH may first focus on food triggers. However, if you ask again later they may remember other triggers.

Use reader-friendly visual design and writing

  • Use strategies such as headings, banners, bulleted lists, checklists, and more line spacing to make text easier to read 
  • Break long paragraphs of information into smaller chunks 
  • Simplify text
    • Use succinct wording and short sentence length
    • Use jargon-free, easy-to-understand language
  • Use bold font or highlight to draw attention to instructions and important details 
  • To learn more about plain language writing, visit:

Share research study results

It can be validating for participants to know their participation led to results. 

  • Share study results with participants and patient advocacy groups in ways that are easy for PWH to understand. 
  • Let them know when you share your results with the scientific community. 
  • When presenting research posters, use easy-to-read formats that can communicate the results efficiently and effectively. To learn more:

Guide for research or sleep study centers

You can improve your data collection and the experience for PWH in many ways, such as by training staff about hypersomnias, using clear communication, and creating a comfortable and safe environment.

Educate staff about PWH

Hypersomnias are rarely diagnosed, so site teams may not know very much about them and how they affect people. Make sure site team members working with PWH understand their unique needs and how to adjust study protocols to meet those needs. 

Communicate clearly with participants

Use communication styles that are easy for PWH to understand

See our “Guide to communicating clearly with PWH” above.

For sleep studies, coordinate ahead of time with PWH and their clinicians 

  • Schedule all desired sleep studies, such as actigraphy with sleep diaries, home sleep studies, home EEG, ad lib extended sleep studies, MWT, and MSLT.
  • Plan to measure all desired variables (such as apnea hypopnea index, respiratory disturbance index, and REM latency) to lower the chance that PWH will have to repeat testing.
  • Confirm any plan to stop or change dosing of any medicines or supplements before the sleep studies.
    • Many medicines, such as antidepressants and stimulants, influence sleep propensity and architecture. Stop these at least 14 days (or at least 5 times the half-life of the medicine and longer-acting metabolite) before sleep studies. 
    • Some medicines, like antidepressants, can cause withdrawal symptoms if you stop them too quickly, so slowly taper them off. This can take several weeks.
    • Some medicines can also take a long time to become effective again after restarting them. Discuss this with the PWH.
  • Have PWH sleep as much as they need for at least 1 week (and preferably longer) before the studies. This will help rule out insufficient sleep.
    • Use a sleep diary and actigraphy whenever possible.
    • If PWH are not able to get enough sleep, consider rescheduling the sleep studies. 
  • To meet these test protocols, you may need to help people access medical leave, such as FMLA or short-term disability, for a couple weeks from their work or school. (Refer them to our web pages “J​ob accommodations and disability income” and “Going to school while coping with a hypersomnia.”) This is especially the case for:
    • People who need to stop one or more medicines before testing.
    • Children and long sleepers who need to get more than 7 hours of sleep at night for 1 to 2 weeks before testing.
    • Shift workers, who often need to stabilize on a normal schedule for accurate testing.

Carefully plan and schedule

  • Ask PWH about their typical sleep needs and sleep-related symptoms and plan accordingly. Interruptions to their usual or ideal sleep schedules are likely to negatively affect their cognition and sleepiness and may affect study results.
  • Ask PWH to talk with study doctors before starting any new medicines or treatments.
  • Try to avoid schedule changes, new events, and new tasks. 
  • Give clear and complete directions and information about the study, such as
    • What will happen during the visit and what to bring.
    • Directions for parking and checking in at the study location.
    • Types of food available and the forms of payment accepted.
  • Tell participants about on-site recovery spaces and transportation policies. 
  • Discuss discharge plans with PWH, who may need plans similar to those for procedures under anesthesia.

Create a comfortable and safe environment for PWH

Sleep studies

  • Understand that MSLTs (Multiple Sleep Latency Tests) and MWTs (Maintenance of Wakefulness Tests) can be very difficult for PWH who are prevented from getting the sleep that they need. The test protocols require that PWH are out of bed and not allowed to sleep between each nap or wake trial. When they’re allowed to fall asleep during each trial, they’re quickly awakened (15 minutes later in the MSLT and after 1 to 3 sleep epochs in the MWT). This can: 
    • Significantly worsen their sleepiness and sleep pressure, which can be extremely painful. 
    • Lead to severe sleep inertia after each short nap or wake trial.
    • Trigger associated symptoms, such as brain fog, headaches, hallucinations, and more. 
  • Allow PWH to sleep as long as they need or normally do when participating in sleep studies. This might mean extending how long the sleep study lasts or having recovery areas for sleep.
  • Follow standard sleep study protocols for outside factors that can influence ability to fall asleep, such as temperature, light, noise, interruptions, hunger, personal activity level (keyed up or not), and personal comfort level. In spite of their hypersomnolence, PWH may have difficulty falling asleep when expected. 
    • Allow PWH who are sensitive to heat and cold or fluorescent lighting to control the room temperature and light-levels during study sessions.
    • When sleep study protocols allow, avoid turning lights back on until the PWH lets you know they’re ready.

Sleep and research study appointments

  • Understand that symptoms around sleep times are often worsened. For example, PWH with severe brain fog or sleep inertia may need assistance simply to find a bathroom down the hall.
  • Ask participants how alert they feel throughout each appointment to make sure they are awake enough to continue with activities. Consider using the “Pictorial Sleepiness Scale Based on Cartoon Faces” from the book STOP, THAT, and One Hundred Other Sleep Scales. Just because a participant looks alert doesn’t mean they are alert.
  • Encourage participants to use relaxation or meditation techniques to lower anxiety during appointments. They may feel anxious about “passing” sleep studies to get access to treatment, which can lead to an inability to sleep despite overwhelming sleepiness. If they’re unfamiliar with these strategies, you can share information about deep breathing, progressive muscle relaxation, visualization, and more. You can find examples of these techniques in Mayo Clinic’s article “Stress management.” 
  • Give PWH a brief exit interview to assess if they’re ready to leave the center. If they or the medical team believes they’re not ready for safe discharge, talk with the PWH to see what they need to be ready. For example, they may need time in a recovery or sleep space, wheelchair assistance to get to their car, or to talk to their supporters.

Guide for researchers

How can researchers make participation easier for PWH?

Lower stress

Participating in research can be physically and emotionally stressful for PWH. 

Consider these ideas to improve PWH’s experience during the study:

  • Communicate clearly, using our above “Guide to communicating clearly with PWH.”
  • Continuously affirm the value of the participants to the study.
  • Ask PWH if they’d like a supporter to help them with transportation, emotional support, help remembering, help completing research tasks, and more.
  • Offer telehealth as an option. This can help participants who can’t travel or stay alert during an in-person visit. Keep in mind that some PWH may struggle with technology because of their cognitive and sleep symptoms, so ask participants what they prefer.
  • Use home sleep studies, home EEG monitoring systems, and sleep actigraphy with sleep diaries when clinically feasible and scientifically justified. Some PWH find MSLTs and MWTs very unpleasant or have complicated symptoms that can’t easily be accommodated at sleep centers. At-home testing options allow more PWH to participate in research. 

Consider these ideas to improve their experience with medicines and treatments:

  • Design studies that allow PWH to continue taking helpful medicines that improve their quality of life while they participate in research. 
  • Offer study treatments for compassionate use outside of the study, whenever possible. For example, plan for open label studies after randomized studies. Consider partnering with a company like WEP Clinical, which can help expand access to treatments. Learn more by reading our newsletter article.
  • Communicate in writing information about FDA and other regulatory approval processes and timelines. This can help PWH plan for possible future access to a study medicine.

Lower costs

  • Reimburse participants for any required medical expenses like lab tests, medical records requests, or birth control.
  • Provide a travel allowance for both the participant and a supporter. 
  • Pay the participant and supporter a per diem to help cover the cost of lost work hours, child care, home care, and other productivity.
  • After new treatments are approved, offer robust patient assistance programs, with a goal toward equitable access regardless of insurance coverage and financial situation.

Include voices of PWH in the research

Research studies into hypersomnias can be improved by including the experiences of people living with the conditions. Here are some ways to include the voices of PWH:

  • Work with participants and advocacy groups to develop patient-centered outcomes that matter to the hypersomnia community. For example, carefully differentiate physical fatigue, mental brain fog, and sleepiness. 
  • Promote health equity by specifically recruiting more underrepresented populations, starting early in the development phase of research. 
    • Be sensitive to the history of abuse of racial and other forms of power in past research studies. Acknowledge the history of atrocities, and build trust. 
    • Gain a better understanding of barriers to participation. 
    • Widen eligibility criteria for studies. Use community health centers, not just large academic research centers. 
    • Actively promote health equity. To learn more, read NIH’s PDF: “Tips for Inclusive Community-Engaged Research.”
  • Collect feedback on the hardships of the research process, and use this to update and improve the research protocol. For example, if blood draws are needed, consider whether providing them in participant homes may reduce the number of clinic visits required of a participant for a study.

Guide to survey design

Use reader-friendly visual design and writing, and share study results with PWH

Read more in our “Guide to communicating clearly with PWH” above.

Tell people what they’ll need before they get started

Let PWH know in advance if certain information is needed or would be helpful to have before they start the survey. For example, do they need any medical test results or names and dosages of medicines and supplements they take? This keeps people from having to stop the survey to find information. Some people, especially PWH who have cognitive difficulties, might not come back to complete the survey.

Tell people how long the survey will take, and allow them to pause the survey and come back to finish later

PWH may have a varying ability to focus, and often cannot predict when and for how long they can concentrate on a task like filling out a survey. If the survey takes an hour and they can only manage 15-minutes at a time, they need to be able to “save and return” to their responses. Surveys that don’t offer this option can yield inaccurate data and lower completion rates.

Allow users to skip difficult questions and come back to them at the end

Some questions may be challenging for PWH to answer immediately because of their cognitive deficits. It can be very helpful to have a way for them to move on to the next question and come back to skipped questions at the end.

Be specific about timeframes

For example, if a question asks people about napping, it should say whether it refers to their naps before or after starting treatment.

Keep surveys as short as possible

If a survey is too long, PWH can become too fatigued, sleepy, or overwhelmed to answer questions accurately and complete the survey.

Group questions into manageable blocks

Help people stay focused by dividing surveys into blocks of questions that are grouped by related content or topic. These blocks should be about 10 single-line questions in length (or about 5 questions if they are longer than a single line).

Design flexible surveys

Because symptoms can be hard to predict, flexible surveys can be more engaging for PWH. To design a flexible survey, think about how and when people will complete it. Use questions that:

  • Allow for more complete descriptions, such as using text fields that fit longer qualitative responses.  
  • Are not “all or nothing” in design (such as “Yes” or “No” or a choice between “a., b., c., or d.”). This may be difficult in some survey designs. To address that need in a survey, it can be helpful to: 
    • Include the option of “Other” with an opportunity for users to add a comment or explanation at the end of each section of questions throughout the survey.
    • Include a free text field for “comments” at the end of the survey.

The Idiopathic Hypersomnia Severity Scale (IHSS) and guide

The IHSS is an important resource for person(s) with idiopathic hypersomnia (PWIH) and researchers. You can use it in both clinical and research environments to measure changes in symptom severity.

What does the IHSS measure?

The IHSS is a 14-question tool that PWIH complete. It measures how severe their IH symptoms are by asking about symptoms such as sleep inertia, impaired daytime alertness, and levels of prolonged and unrefreshing daytime and nighttime sleep. 

This tool isn’t validated for diagnosis. Visit our web page about diagnosis and classification for the complete diagnostic criteria. 

How can the IHSS help PWIH and researchers?

The IHSS is a tool that could help researchers identify PWIH and increase their participation in research studies. PWIH and researchers can also use the tool to track symptoms as treatments or other variables are changed. 

Where can I find the IHSS?

Download the IHSS PDF


thumb_IHSS

Partner with the Hypersomnia Foundation (HF) 

We can help you recruit and retain research participants and share your study results

PWH want to know more about hypersomnia research. They also want to help researchers find answers. 

  • We promote currently-recruiting research studies and communicate research findings to the hypersomnia community in many ways, such as through our website, e-newsletter, social media, and events. We have thousands of people in our community. 
    • Contact us to learn more about partnering with us.
    • To learn more about currently-recruiting research studies, visit our web page “Learn about clinical trials.”
  • We connect qualified researchers to our international patient registry data. 
    • We have a registry at CoRDS (Coordination of Rare Diseases at Sanford), which is a patient registry for rare diseases. 
    • You can apply for free access to survey data and participant contact information from thousands of people with hypersomnias, including idiopathic hypersomnia, narcolepsy type 1 and 2, and Kleine-Levin syndrome. To apply, contact CoRDS by:
      • Emailing  
      • Calling 1-877-658-9192 
    • To learn more about our registry or to refer PWH, visit our Registry web page. 
    • You can read some initial results from the registry in our article “IH Symptom and Treatment Insights From the HF Patient Registry.”

We can connect you to other researchers, professional events, and patient advocates

PWH want their stories to inspire hope and ongoing research. They are also eager to find out about new discoveries in hypersomnia research. We can help you:

  • Meet our researchers and learn where they’ve been and where they’re going
  • Attend, support, or be a speaker at our events 
  • Locate patient advocates or medical professionals to help support your research

You can watch presentations on some of the latest research at our video and podcast library.

Apply to HF’s research award programs 

We support ongoing research to find the causes of hypersomnias and improve diagnosis and effective treatment of PWH. While we’re interested in researching all primary hypersomnias, we primarily support research of idiopathic hypersomnia and its overlap with narcolepsy type 2. 

What are the current research priorities of the Hypersomnia Foundation?

We have several key research interests and prioritize research with the following aims:

  • Identify clear phenotypes and causes (etiologies) of hypersomnias.
  • Develop biomarkers, measurements of functionality, or quantitative assessment tools that can be used to improve diagnosis or clinical trial effectiveness measurements.
  • Demonstrate the safety and effectiveness of medicines for the treatment of hypersomnias. 
    • If you’re interested in drug repurposing, consider using the ROADMAP tool for research guidance and support. To learn more, visit CDCN’s web page: “About the ROADMAP Project.”
  • Develop personalized treatment protocols that predict the most effective treatments for each individual. 

We’re very interested in funding research that, if successful, would support large research grant applications, such as NIH.

How do I apply?

There are 2 ways to apply for our research grant funding.

  1. We partner with the AASM Foundation to jointly fund research in hypersomnia sleep disorders on an annual basis. The Letter of Intent grant cycle opens each year in September. There are 3 grant categories to request up to $50K, $100K, or $250K. Any researcher may apply, even if they are not an AASM member or are located outside of the U.S. 
  2. Researchers may apply directly to the Hypersomnia Foundation for research funding. We welcome applications at any time. 

Published Apr. 30, 2020 |
Revised Feb. 1, 2024
Complete update Jan. 20, 2024 |
Approved by our medical advisory board